Thursday, January 26, 2017

What I have Learned Since Being Granted SSDI

Last year, I wrote about what it was like to have to accept the fact that I am affected enough by my disease to have to apply for disability because I can no longer work. I was granted disability in October of 2015. Here are some things I have learned about being on disability since then that I never knew.

In certain circumstances, you have to pay taxes on your award. And they don’t really tell you this either. It all has to do with whether or not you are married and how much spouse earns. Chances are, if you are single and SSDI is your only source of income, you will not have to pay taxes, but I would look up the rules. I have 10% withheld automatically to offset what I may owe at the end of the year.

You are eligible for Medicare after 2 years. BUT, that 2 years is calculated from your date of disability, not you date of decision. The difference is this: your date of decision is the date you get approved to receive SSDI. As I said earlier, I was approved in October of 2015. That is my date of decision. But, the SSA also has to determine when you became disabled enough to receive benefits according to your medical records. In my case, it was the day I first fractured my back, or July 22, 2014. So when I received my paperwork stating I was eligible for Medicare in July of 2016 (instead of October of this year like I assumed) I was a bit confused.

You do not have to accept Medicare when it is offered. There is a lot of confusion around this. There is also a question about being fined if you refuse to sign up the first time Medicare is offered. Under Medicare statutes, you do get fined if you don’t sign up the first time it is offered to you-unless you meet certain requirements. One of which is being under age 65, disabled, and covered by a spouse’s insurance through an employer of over 100 employees. So you must be able to prove you are covered by acceptable health care insurance already. I am covered under my husband’s insurance so I was able to decline Medicare until I actually need it.

Do some research first. The above being said, there are actually insurance companies and businesses that will require you to take Medicare when you are first eligible. There may not be many, but they are out there, so it is very worth it to make that phone call rather than being found out and held responsible for all the payments your insurance agency made on your behalf before they found out your eligibility status.

Don’t trust the SSA. In stating that, I actually mean make copies of the paperwork. Whether or not you accept or decline Medicare, make copies. And don’t lose them. I lost mine. And then the SSA lost my refusal postcard. So now I am enrolled and paying for a service I don’t want or need. I have to “Unenroll”. Which means I have to pay next month’s premium too. Something about 30 days from the month we’re in. Which automatically means anyone wishing to unenroll will be on the hook for paying the next month’s premium. And there are no refunds unless you can prove you refused it before they signed you up. Or-it’s your fault unless you can physically prove it’s their fault.

Staying ‘healthy’ is a double edged sword. This is the hardest to explain. Since my disability determination lies in my fractured back (I’ve since fractured it a second time) mobility is a big issue for me. Walking is the only way to try to strengthen my back and keep me from losing so much muscle tone that I end up in a wheelchair-a possibility anyway due to my chronic diseases that were not considered in my disability case. But walking can also be counted against you in disability case reviews. So how do I explain that I walk but it still hurts? That I walk because I am terrified and I’d rather the pain of walking than the pain of another broken back? That I walk but I still cannot work?

Well, these are the few insights I have gained in the last year and a half of being “in the system”. I’m sure I’ll learn a lot more. Maybe there will be a Part 2 to this article in the future!

About Me

Born and raised in Rochester NY, I was diagnosed with Sjogren’s 4 months after my second son was born. My kids are now 21 and 23 years old. I have since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. I have raised my kids, worked at my career for over 30 years, and have been a wife to her husband of 26 years while being diagnosed with an autoimmune disease for 21 of them. I currently writes from the heart about these experiences while wrangling our one rescue dog and three rescue cats.